Please Assist- Has Anyone got Modic Changes in their Spine & tried Dr Hannah's antibiotic protocol (MAST)?

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Hi there. I was wondering if people could help me please. I wanted to know if anyone sent their MRI scans of their lower back to the MAST centre to be assessed for modic changes? I have sent mine in June, and I started the antibiotics 5 weeks ago with no improvement yet. I have chronic back pain and also ankylosing spondylitis.

I would really like to chat with people out there that are also on this MAST- modic changes protocol and to see how its going.

This is my only hope now for my lower back pain.

Thanks

Rosary1

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  • Posted

    Hello again. Realised that I hadn't been back here in a while to update.

    I finished my 100 day course of antibiotics (doxycycline) about 3 weeks ago, with zero success. I even felt during the last couple of weeks that my pain had slightly increased, with it spreading around the front towards the groin area much more. Lots of intense, localised pain points in this area and in my sides, almost like a chronic, neverending stitch. Not 'back pain' as such, but all radiating from there.

    I have to say I felt/feel pretty demoralised at the end of treatment, especially reading about the success of others. But I went into this with my eyes open, knowing that it does not work for everyone.

    The only positive news I can report is that literally in the last few days I think I have started to notice some minor improvement. My pain levels are exactly the same as before, but for 7 consecutive days now I have not taken any form of painkiller. This after around 6 years of taking painkillers on a daily basis. It is my dream to become drug free so this in itself is a major breakthrough for me, but I must stress I am not in any less pain. But the mere fact that I can achieve a level of 'acceptable' discomfort *without* drugs which is equal to what I was previously achieving *with* drugs seems to indicate there must be some kind of improvement. Either that, or the painkillers were actually no longer working in any case as I'd been taking them so long and become immune to them – I do think this theory is just as likely, if I'm honest.

    I have a follow-up appointment soon, so will try and remember to report back with anything of interest.

    • Posted

      Dear Jane, Why doxycycline instead of amoxicilin+clavulanic acid? I understand that the latter is more effective to gram-positive bacteria such as p.acnes.Your p. acnes might be resistant to doxycycline and that could explain why you did not get better. Regards, Ana
    • Posted

      I agree, why doxycycline? The protocol calls for Bioclavid (Augmentin), single or double dose. Doxycycline could possibly reduce TNF, a pain producing cytokine, but there are no studies to indicted it's effectiveness for modic changes.

      Nevertheless, some have taken almost a year to get results.

    • Posted

      I was prescribed doxycycline because I'm allergic to penicillin. Update to my post above, I have continued to notice a gradual improvement and have not taken any form of painkiller or any other medication for 13 weeks.

      I would say the absolute worst pain has subsided - the intense sciatica, the ice-pick in the spine, the agonising nerve pain at every movement - and I'm left with a raw, dull ache that still goes into spasm if I make any sudden movements. Day to day-wise, still not much improvement -  putting shoes and socks on, bending down, all housework and getting in and out of car still very painful. Still waking up in a lot of pain, though less than before and it doesn't take as long to subside in the morning.

      Exercise wise, I am walking more and am finally able to pick up the pace a bit so it actually feels like I'm getting some benefit. About 4 miles a day at the moment (2 x in morning, 2 x in evening - roughly half hour each). Longer walks when I get the time - did 12 miles one day last week for eg.

      So overall, am much more comfortable. Just wish I could do simple things like lifting and bending down. Feel so weak and have severe lack of muscle strength. Balance is also terrible due to no core strength. Cannot sit on floor to do yoga or pilates yet.

      Anyway - am 8 months into the 12 months so hopefully will continue to improve.

    • Posted

      All the best to you. You already improved a lot, and will continue to. Ana
  • Posted

    Update: I have now taken the Antbiotics for 50 days out of 100 and for me its going very well, the sideeffects for me are very minor.

    The constant pain i had before have almost dissappeared. I have more days with no pain than with pain so i am very optimistic When i do have pain its no longer that sticky pain, now its just feels like musclepain, its hard to explain cause its still very new to me.

  • Posted

    Hi,

    I'm starting the antibiotic treatment on Monday. 2 weeks single dose, and then, if my body is okay with it, I move on to the double dose for the other 1o weeks.

    My question is regards to exercise while on the treatment. I usually cycle to work (5 miles, slowly) and I have been going swimming 3 times a week as it helps with the back pain.

    I understand I have to reduce my level of exercise, but am worried I'll gain loads of weight, and generally feel bad.

    What do others on the treatment recommend in regards to exercise levels?

    Thanks in advance.

    • Posted

      Hi, I started my AB treatment 15 days ago and stopped with all the exercise I was doing. I used to exercise more than 3,5 hours/week dancing flamenco, swimming and running. I now feel exercise deprived, but I take it as an important part of the process. I know that if the treatment does not work, I probably would not exercise for much longer. So I take treatment very serious. Since I started the AB I lost 1 kg because of the lack of appetite, but the last days I have been feeling better, so I believe I can recover my kg back. I advise you to rest quite a bit and take it slowly. Although the AB is for 100 days you can feel results up to one year. Regards, Ana

       

  • Posted

    Studies indicate Modic Type 1 respond to antibiotic therapy, there are no studies done on Modic Type 2 yet. The timeline for response may be up to 1 year following antibiotic therapy and you can see a nice graphic describing this at _____ that I have done after taking the certification course to help those under therapy understand. Print it out and stick it on your fridge.

    A pressing issue is to determine if the Modic changes are related to infection, or just structural. Indications as of now are about 30-40% are due to infection. Recently, work by Dr Tannenbaum at Mount Sinai in N.Y., indicated that Diffusion Weighted MRI (DWMRI) is capable of determining if Modic chages are due to infection or purely structural in nature. I have not had a chance to communicate with Dr. Albert regarding this method being icorporated in the protocol, which could improve results.

    Jus wanted to take the time to wish you all the best, along with all those suffering from Modic chnages, reminding those under therapy to be patient with results and to take it easy under therapy to avoid further jury, which can compromise results.

    Dr. Steve

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    • Posted

      HELLO DR. STEVE,

         IF MODIC 1 CHANGES ARE DUE TO INFECTION ( THE 30%-40% ), IS THIS "spondylodiscitis of the spine", OR JUST DISCITIS , WHICH CAN THEN BE TREATED WITH ANTIBIOTICS ? AND IF THERE IS NO INFECTION, IS THIS MODIC 1 "degenerative disease"  (AND HOW WOULD THAT BE TREATED ) ? THANKS. WILLIAM.

    • Posted

      Hi William,

      Discitis is a descriptive term for inflammation of the disc. Spondylodiscitis would include the disc and vertebra. There could be different causes of inflammation, including infection with or without Modic changes.

      Treatment with antibiotics is reserved for Modic Type 1 changes. Dr. Albert's study did not include Modic 2 or 3; so it is very specific, including previous or concurrent disc herniation. The problem we are running into is that the new high frequency MRI units do not distinguish between Modic types. They note "reactive endplate changes". Based on this, you do not know if you are treating Modic 1 or not, therefore, results may not reflect those of the study.

      In general, Modic changes, infectious or not, are unstable. There has been some success with intradiscal steroid injections (inside the disc). Unfortunately, many Orthopedic doctors are recommending epidurals, which have been shown to be less effective with modic changes.

      If symptoms are severe, fusion surgery can be beneficial. Newer biocement injection techniques are also proving effective, as well as some stem cell therapies.

      So, Modic 1 can be infectious or structural. There are claims that the difference can be discerned from standard MRI, however, I have seen no evidence of this, despite Dr. Albert asserting these claims herself, albeit to potential patients. The current literature supports Diffusion Weighted MRI to discern between infectious and non-infectious Modic changes.

      The problem is antibiotics are fairly inexpensive compared to other forms of treatment noted as well as expensive diagnostic testing. If you have Modic changes or "reactive endplate changes" on high frequency MRI and correlate with clinical history, associated herniation & symptoms; do you take a trial of antibiotics or go for a low frequency MRI to see if they are Modic 1 or not, then, if Modic 1, go for a DWMRI?

      So, perhaps hundreds for antibiotics, or thousands for testing and/or invasive procedures? Obviously, for most, the choice would be antibiotics; however, as stated; this could very well dilute the results and give detractors more to complain and lobby about, making this form of therapy more elusive, especially here in the States.

  • Posted

    I've seen it referenced several times that someone receiving MAST should curtail all physical activity. Can someone share the detailed rationale behind that recommendation? Does continuing to exercise completely nullify any positive effects of the antibiotic?
    • Posted

      I was enquiring about exactly the same thing. From what I understand, and I could be completely wrong, is that the bones in your spine are actually healing while you're on the antibiotics. For the first few weeks, the bacteria start to die, and this allows the back to do what it normaly does and heal itself.

      My doctor said it's really important not to do anything that could pottentially damage the bones while it's in the process of healing itself.

      I used to cycle and swim regularly, and am 50 days into my course of antibiotics. I'm now swimming, very gently, once a week, and cycling, again very gently, twice a week.

      But if anyone else on here has any other information regarding exercise on the antibiotics, please can you let me know.

      Thanks.

    • Posted

      The bones only begin to heal after the antibiotics have killed all the bacteria. Because Modic 1 represents destruction of the bone itself due to the acid secreted by the bacteria, the microfractures that result cause further destruction. Because the marrow involves the ingrowth of unmyelinated nerve fibers (nerves without protective covering), the microfractures are also very painful.

      The study was based on findings of marrow destruction related to propionic acid. Normal activities can cause microfractures that can be painful and complicate healing with Modic 1 changes. If you want results similar to those achieved in the study, curtail activities that stress the spine - for the duration of treatment/healing - 1 year.

  • Posted

    glad to see this subject .... would love to know more about Dr Modic himself.

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